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About muffinxx

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hi
please refer to my earlier post regarding neuro diseases with celiac
my mother developed a condition called vasculitis through celiac disease it was nuero vasculitis she had, which is basically blood pressure but involved her having mini strokes, dont panic not major ones just lots of tiny little strokes that affected her eyesight and co-ordination at first yes after the MRI they thought it was a tumour due to the lesions on her brain, however the brain biopsy ruled out a tumour.
there is a few posts now regarding sight lose with celiac
keep me posted
x

I was wondering how practitioners check your metabolism!
Is there a test to see if you have a high or low metabolism and what are the statistics of your rate of metabolism changing throughout your life... and what are the reasons for that change?
Up untill i was about 13 i had a very high metobilsm i could eat whatever i wanted and not put on a pound and was very hyporactive, i turned 16 and my metabolism slowed right down i got very tired easily and my weight went up and down. I am a type "o" negative.
I pretty much stayed on the same foods, and i wonder if it was that i was in the era that we started to use microwaves or companies used different additives in there foodstufs or was my body just changing with age, maybey a pubestent downfall.
And if your metabolism can switch from high to low ( whicj is the obvious one with age, can it switch from low to high?
I still feel that fibro and celiac is a very grey area for misdiagnosis. if the diagnosis was so easy as say "super size me" then we would all be laughing!

red 345
Please read my earlier post,
after 4 years of a Fibro diagnosis and 2 years of a celiac diagnosis they sent my mum to a cardio specialist as she was getting a whooping cough and pain down her arm, he was alarmed by the fact that my mother was in so much pain however didnt display any of the normal tendencies that were expected after the routine excercises.
I thought about sending my mum to a chiropractor, as i thought it may be muscular.
I would say if any celiac sufferer felt the need to see a cardio specialist then ask them to concentrate on blood pressure! in particular ask about a condition called vasculitis especially nervous sysem vasculitis.

my thoughts are with you!
i always say to myself, i could have done more, and by the way, the nurses in the hospital were totally fed up with me anyway...there is not a question i didnt ask or a medicine i didnt look up on the internet
its funny, i am reading your replies and i thought the first thing you all would have said was take your doctor to court...lol i know americans been there plenty of times and u cant spit on the sidewalk withouth geting a letter from your lawer!
i have a boyfriend that is a vegetarian and wouldnt contemplate eating food that was put in a microwave...i am starting to think he has a point!
im am so glad i found this forum
when my mum had the rare fibromaraglia (in this country...god the doctors here are so condecending)..i backed her all the way!!!
i am type O negative just like my mum
i will stick to my gluten-free diet without the diagnosis
x

now i am seriously levitating..lol
my mum was a fit woman, and the only condition she suffered from when i was little was very bad migranes 20 years ago!!!
and the next thing she developed derviticulitis which is IBS then she had a duadinal ulcer, then osteoperosis then fibromarlgia then trigeminal neuralgia!
i asked her specialist at the post mortem is this a heridetary condition three times he said no!!!!
a year ago i had bad stomach cramps i couldnt even have dressing on salads but i was visiting the toliet 5 mins later!!
he now wants me to go for a blood test that he says will show certain atibodies in my blood that will be evident if i haver an ulcer!
i did
x

hi everyone i posted this in another topic but i am gonna paste it on here also
Hi everyone
had to reregister i was itching to type to you all..lol i was practically levitating when i found this forum and your replies to my post
ok here goes without scaring the hell outta u all
4 months ago my life changed i lost my mum she was 58
8 years ago she suffered very bad arm and shoulder pains and EVENTUALLY the doctor diagnosed her with fibromaralgie (bad spelling) which by the way only diagnosed this after she diagnosed herself after research
for a few years she was on painkillers then took plurecy and had rapid weighloss went from 11 stone to 6 stone, she was like this for a year and then her doctor diagnosed her with celiac, she stuck to her gluten free diet faithfully and for the next 2 years she didnt put on weight but the doctors dint send her for any more tests.
6 months ago she started taking very bad jaw pains( at first she just thought it was toothache) and also chest pains,then when she was in agony her doctor said it was a condition called trigeminal neuralgia, they never even sent her for an MRI scan, just wrote her a prescription for anti convulsants (typical of UK GP's) so when eventually the whole side of her face was numb and her speech was lost they sent her for a MRI
2 days later we had an appointment for the results, firstly they said they thought it was breast cancer, or maybey lung cancer and pointed it with a glare and frown she was a 5 a day smoker (what a blow for my mum) or possible a condition called neuro sarcasiodosis and they would put her on steriods and she had to have all sorts of MRI and bone scans that week.
throughout that week dont forget my mum although had a new lease of life after the steriods still could not speak to me, can you imagine how heartbreaking that was for both of us!
so after the test she was admitted to hospital for a brain biopsy as they thought it might have been a brain tumour at that point, they did not do it that weekend and let her out for the weekend, she took a viral infection at home and went back to the state she was in before the steriods ( which was horrific) you cant imagine out of respect for my mum i will not say what she was like! needless to say she nearly dierd at home that weekend!
she then was in hospital for 2 months they did not get anything from the brain biopsy they put tubes down her throat to see if they could get a specimin from her lungs they even asked us if she had been to america in the past few months???? they even thought it might be TUbercilosis!
they eventually came up with a condition called central nevous system vascilitis which is inflamation of the blood vessels and she basically was having mini strokes
i still have nighmares about the state my mum was in at the hospital as it was not diagnosed as a cancer she could not get in a hospice and have private time with her family and friends and more privacy , she was in a public ward for all to see!
she died in hospital i wasnt there i didnt make it on time i was 15 mins late!
they asked to do a post mortem i agreed and 3 months later we all attended thinking they were going to tell us it was a sinister tumour
IT WAS THE CELIAC!!!
the evidence was in her spleen they said it was the size of a walnut!!
they said that you can only detect the enlarging of the spleen not the shrinkage of it and with her spleen so small that she could not fight infection and she somehow caught the virus you find in chickenpox or it could have been stress a lot of things could have done it, jeez the common cold could have....plurecy nearly killed her 2 years earlier!
how tragic, my mum died of this condition, i do not want to scare the hell outta you all i just thought i would post this to let you all know about 2nd third and forth opinions from your doctor.
i miss her and think about her every day, if my mum had had a more switched on doctor she could have had her spleen removed and been on low dose antibiotics for the rest of her life,,tragic!
hugs
muffin

Hi everyone
had to reregister i was itching to type to you all..lol i was practically levitating when i found this forum and your replies to my post
ok here goes without scaring the hell outta u all
4 months ago my life changed i lost my mum she was 58
8 years ago she suffered very bad arm and shoulder pains and EVENTUALLY the doctor diagnosed her with fibromaralgie (bad spelling) which by the way only diagnosed this after she diagnosed herself after research
for a few years she was on painkillers then took plurecy and had rapid weighloss went from 11 stone to 6 stone, she was like this for a year and then her doctor diagnosed her with celiac, she stuck to her gluten free diet faithfully and for the next 2 years she didnt put on weight but the doctors dint send her for any more tests.
6 months ago she started taking very bad jaw pains( at first she just thought it was toothache) and also chest pains,then when she was in agony her doctor said it was a condition called trigeminal neuralgia, they never even sent her for an MRI scan, just wrote her a prescription for anti convulsants (typical of UK GP's) so when eventually the whole side of her face was numb and her speech was lost they sent her for a MRI
2 days later we had an appointment for the results, firstly they said they thought it was breast cancer, or maybey lung cancer and pointed it with a glare and frown she was a 5 a day smoker (what a blow for my mum) or possible a condition called neuro sarcasiodosis and they would put her on steriods and she had to have all sorts of MRI and bone scans that week.
throughout that week dont forget my mum although had a new lease of life after the steriods still could not speak to me, can you imagine how heartbreaking that was for both of us!
so after the test she was admitted to hospital for a brain biopsy as they thought it might have been a brain tumour at that point, they did not do it that weekend and let her out for the weekend, she took a viral infection at home and went back to the state she was in before the steriods ( which was horrific) you cant imagine out of respect for my mum i will not say what she was like! needless to say she nearly dierd at home that weekend!
she then was in hospital for 2 months they did not get anything from the brain biopsy they put tubes down her throat to see if they could get a specimin from her lungs they even asked us if she had been to america in the past few months???? they even thought it might be TUbercilosis!
they eventually came up with a condition called central nevous system vascilitis which is inflamation of the blood vessels and she basically was having mini strokes
i still have nighmares about the state my mum was in at the hospital as it was not diagnosed as a cancer she could not get in a hospice and have private time with her family and friends and more privacy , she was in a public ward for all to see!
she died in hospital i wasnt there i didnt make it on time i was 15 mins late!
they asked to do a post mortem i agreed and 3 months later we all attended thinking they were going to tell us it was a sinister tumour
IT WAS THE CELIAC!!!
the evidence was in her spleen they said it was the size of a walnut!!
they said that you can only detect the enlarging of the spleen not the shrinkage of it and with her spleen so small that she could not fight infection and she somehow caught the virus you find in chickenpox or it could have been stress a lot of things could have done it, jeez the common cold could have....plurecy nearly killed her 2 years earlier!
how tragic, my mum died of this condition, i do not want to scare the hell outta you all i just thought i would post this to let you all know about 2nd third and forth opinions from your doctor.
i miss her and think about her every day, if my mum had had a more switched on doctor she could have had her spleen removed and been on low dose antibiotics for the rest of her life,,tragic!
hugs
muffin

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!